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Hi guys. Laying awake last night after a day of eating really yummy foods that I could have never dreamed of enjoying while I had UC, I started to get nervous about my next surgery. My end ileostomy has been a PEACH -- it works so well, no blockages, relatively low output, no issues with dehydration, no leaks, and although I'm still on the low residue diet, I've yet to find any foods that don't agree with me. It even seems that I'm no longer lactose intolerant now that my colon is gone.

I'm having three steps so the j-pouch won't be formed until my next surgery. I'm pretty sure I am still going to go through with it but I'm scared that I will look back on this decision and kick myself for throwing away a stoma that I *know* works well for a pouch that could be a nightmare or even just not as good as what I have now.

That said, life with an ostomy is a hassle too, and if I believed it was forever that would take a lot of mental adjustment too...

I guess I just wanted to share and ask if anyone else who had three steps went through this period of indecision too, and how you dealt with it.
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oh my liz. I felt exactly as you are describing. I had to wait a minimun of 6months between step 1 and 2 because of how sick I was. But during that timeframe I felt so much healthier. I was active, gained weight, was eating anything I wanted, etc.. I spoke to my surgeon about just sticking with an end ileo. .. and he truly laughed in my face. Yes he laughed right at me. He said why would a young, attractive, fit female want to live her life with a bag attached to her. He made me feel disgusting. He also threatened me with the fact that no matter what I needed another surgery and if I kept the end ileo the surgery to remove the rectum, etc.. was a complex difficult surgery and I would probably suffer a lot from it. Stupid stupid me.. I let him sway my thoughts. And I did no further research on the matter. Boy how I regret that. So I carried on with step 2 and step 3 for the jpouch.

long story short. The jpouch failed miserably for me. And after 3steps for the jpouch, I had to have another 2 massive surgeries. Along with many other minor surgeries which I am still ongoing. I now have a permanant ileostomy.

Point to you is.. do your own research.. completely. Don't let one forum post such as mine, one doctor, or even one friend sway you. Also, there really is no hurry to get the second step... as long as your rectum isn't causing too much trouble. So take the time you need to thoroughly investigate what the right choice for you is.
feel free to pm me if you have any more questions regarding what I went through.
liz.
If you're not ready for the next surgery and you're happy with life as it is now, you can put off the next step for quite a while. Some people have waited years. And even if you do schedule the next surgery, you can cancel it right up until the time they put you under. (I'm sure they don't like that but you're the customer.) Often just knowing that you have that control will allow your brain to get behind the surgery.

It seems to me that most of the permanent ileo people here REALLY like their choice are are doing very well.

One other thing you might ask about, see if your surgeon could do the j-pouch formation and takedown in the next step which would eliminate the naughty loop ileo. But even if you do decide to go ahead with 3 steps, you'll only have to deal with a loop ileo for a short period of time.

Unfortunately, there are no guarantees that your j-pouch will be good to you, but the percentages certainly are in your favor.

kathy Big Grin

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